Discussing Social Media and End of Life

I have been on a wonderful whirlwind tour of listening, sharing, and discussion in online forums this summer in preparation of the upcoming MedicineX panel I will be moderating with my rock-star panelists -- @SusannahFox, @MeredithGould and @Colleen_Young on September 7. (To learn more about the inception of our panel and follow our "flipped classroom" model, please take a look at the Storify that Susannah Fox has compiled)

This week is no exception, as I will be guest hosting the always engaging and robust Tweet Chat #HPM (Hospice and Palliative Medicine). I hope to pose some questions and listen to the #HPM community regarding how social media is being used and perceived at the end of life. This is a complex and multi-layered area, filled with cultural stigma, fear, courage, vulnerability and ethics. Do we afford the same level of discussion and engagement when one shares about end of life as when one shares about other health concerns? What about when family members are posting about their loved ones at end of life (NPR's Scott Simon tweeted about the experience of his mother's death)? What about choices -- is there subtle and not so subtle bullying that occurs when treatment options do not align with other members of the online community?  I don't have answers, but I am open to listening, learning and sharing with others on this topic -- please join in #HPM at 9:00 PM ET/6:00 PM PT on Wednesday, August 20--newcomers welcome!

Here is the topic rundown for the August 20 #HPM chat:

T1 Do we have different standards in the use of social media for those at the end of life than for those who are in active treatment for a disease?

T2 Who determines appropriate use of social media in a situation when a family member is doing the posting on social media/networking sites (Facebook, Blogs, Twitter, etc.) and not the patient?

T3 Are there ethical issues that we need to think about?

CT: Closing thoughts

For background info:
Communicating the Experience of Illness in the Digital Age
Storify by Susannah Fox

2014 Medicine X: Communicating the Experience of Illness in the Digital Age

Time on the Internet can often be measured by the millisecond. We bemoan the shallowness,brevity and sensationalism of topics that seek to capture our momentary attention on our news feeds. Yet in the early part of 2014, a controversy hit the Internet with the intensity of a meteor and then instead of rapidly burning out, gained in intensity and continued discussion. The controversy became known on the Twittersphere as #Kellergate and revolved around separate columns written by former New York Times editor, Bill Keller and his wife, Guardian columnist, Emma Keller opining on blogger Lisa Bonchek Adams' frequent use of social media as a platform for chronicling and sharing her experience of living with progressive, incurable cancer. Topics of public disclosure of illness, ethics, dignity, TMI (too much information), choices surrounding treatment and death and dying were thrown into the open forum of the Internet. Without any precedent for such public sharing in real time, dialogue became divisive and heated. What appeared to be missing from the discussion was the impact of social media tools and online communities on the large population of those living with chronic illness. Attempting to add some insight to the phenomenon of illness blogging, I wrote a piece in early 2014 for WBUR's Cognoscenti site: Memo to Bill Keller: This is Why Patients Blog About Illness

Now more than half a year later, the discussion has stepped away from the specifics of the Keller/Adams controversy and has entered into a broader conversation on the issues of disclosure, community, isolation and connection. The international conference, Medicine X, held annually at Stanford University, has deemed this an important topic for the upcoming 2014 conference and has invited me and several colleagues to present a panel discussion entitled: Communicating the Experience of Illness in the Digital Age: Reaching Beyond the Keller/Adams Controversy.  I am honored to be the moderator of this panel of amazing thoughtleaders, Susannah Fox, Meredith Gould, and Colleen Young, all pioneers in the fields of peer-to peer-health, online communities, community management and the evolution of communicating the  experience of illness in the digital space. As a panel we will attempt to examine and identify the key aspects of the larger phenomenon of communicating the experience of illness in the digital age that we hope will help inform the continued evolution of online communities.

I would welcome comments and discussion in the comment section of this blog -- more voices on this subject are needed as we prepare for the Medicine X conference panel. I hope to see many of you in Palo Alto, September 5-7. For those of you who can't attend, I will post live-streaming and Tweetchat information for Medicine X as it becomes available.

Haiku Rally #3 Morning Coffee

During the month of November I invite you to join me in composing a daily haiku -- a great way to drop into mindfulness during your day. It doesn't take long and you don't need to think of yourself as a poet or author...simply describe what you see around you--in this moment. The difficult part is parsing this down to 17 syllables.

Morning Coffee

Dark, ebony beans

 Aroma mixed into steam

Anticipation

Haiku Rally Day 2

Mindfulness is about being present with awareness as our life unfolds, very similar to crafting a haiku. Join me in my month long Haiku Rally by posting your haiku in the comment section below and sharing the Haiku Rally with your friends.

Morning Air

Frost on the pumpkin

Leaves crunching under each step

Breathing in this day

Communicating the Experience of Chronic Illness Through Blogging

What does blogging have to do with communicating the experience of illness?  Quite a bit.  I have been exploring the intersection between narrative medicine, coping with illness, and blogging for my research in the Pain Research, Education and Policy Program at Tufts School of Medicine.  Blogging creates a unique and accessible way for individuals who are isolated with chronic illness to be able to express and communicate their experience beyond the medical diagnosis. It provides a way for patients to tell their story and begin to make meaning out of what has happened to them, in real time. 

I recently was interviewed by Helen Osborne, Health Literacy Out Loud, about my research on use of tools of blogging and social media in health care. If you are interested in hearing more about communicating the experience of chronic illness through blogging, I hope you will listen to my podcast with Helen by clicking here.